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Curious if anyone has tried IV Ozone, and if so, did you see any benefit? PANS dd has so many different issues it's like whack-a-mole, and nothing seems to help for long, if at all. (Bartonella, Marcons, Mold toxicity/Ochratoxin A, parasites, especially high in Blasto, etc, etc) Wondered if the ozone might clear out several problems at once.

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@searching_for_help Yes, my DS did 13 Ozone treatments over 3 weeks in August of 2017.  It was supposed to be 15 treatments, but his OCD symptoms were so severe, it was a safety issue getting him to and from the treatments.  After about 10 treatments one of his OCD issues went away.  This was where no one could speak while standing in a doorway or near a doorway.  We are in a 2 bedroom condo, so we are almost always near a doorway. This was a huge relief when this went away, but he still had many, many more equally difficult symptoms left.  Not sure if it would have made a difference if he completed all 15 treatments.  After the treatments his bloodwork did show him clear of all infections.  Ultimately, he was approved for monthly IVIG.  He has had great success with these...nothing short of a miracle.  He had one HD IVIG six months prior to Ozone.  This was no where near as successful as the post-Ozone IVIG.  It could be argued that clearing the infections with Ozone impacted the success of the IVIG.  

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Thanks so much for your response. Did he have IV ozone, or another kind? Did you have to pay out-of-pocket for ozone? It's interesting - I've heard several people mention the HD IVIG not being effective, but the more frequent ones being helpful. 

Glad to hear your son is having good success! 

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Yes, it was IV Ozone.  It’s considered “alternative” in the U.S., so it definitely wasn’t covered by insurance.  I believe Glutathione is usually administered with Ozone.  My DS didn’t have it with first treatment, but had the Glutathione with 2nd treatment.  He went into a rage after the 2nd treatment.  Doctor said it was a reaction to Glutathione, and had me give him Molybdenum (mineral) to help him tolerate the Glutathione.  

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I am following this thread with interest.  Ozone therapy is one of the treatements suggested by my son's new doctor. (Son, age 28 with PANS since about age 12.)

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msmom,

Sadly, my dd was unable to do the IV ozone. We drove nearly 2 hours to do it, but when they saw her labs they were concerned she was not healthy enough to do it. (Of course, we weren't warned of there being any glitches about that... ugh.) DD is almost 27, and has had this since she was 9 years old. She was crushed, as we don't have much left to try. I had to hold onto her hand while I drove home, she was so distraught over it, that she was hopeless and wanting to die. My fear was she would try and jump out of van. It was a horrible day. There have sadly been too many of those days for her.

The most worrisome lab for that doc was her low sodium. It's been running between 120 - 126. She eats and drink LOTS of salt, plus plenty of the healthy Real Salt, and even takes sodium tabs to help with her urinary frequency. Makes no difference at all. Her weight is dangerously low, and I monitor her caloric intake. Her anxiety seems to be causing her to literally waste away. It's so hard to get anything done with her health like this.

The ozone doc DID say that ozone would not be any cure-all, but it could help somewhat. We'll take any help we can get, but she's just not in a good enough place to get it done now.

Please let me know if your son has it done, and how he responds. I hope this is something that can be helpful for him. (Note: he'll have to have his G6PD tested before they'll do it.)

 

 

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@searching_for_help  I am so sorry your DD was unable to get the treatment.  I can completely relate to the issue of thinking she would jump out of the van. We were at that point less than two years ago.  What an awful feeling when you don’t feel safe getting your child to and from medical appointments.  

I am curious what treatments you have already tried. My DS was also a severe case.  I thought the day would never come when he would get better, but he did. 

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